Today, I’m writing about some prompts that were given to chronic illness bloggers at A Chronic Voice‘s monthly chronic illness link-up party. Thank you, Sheryl!
The writing prompts we were given for this month are: Failing, Succeeding, Pausing, Deciding, and Thriving with chronic illness.
I’d like to start by observing my last post which was about receiving my Ankylosing Spondylitis diagnosis over a decade ago. I celebrated that milestone with a new article called Ankylosing Spondylitis – 10 Years After Diagnosis. Today I’m moving forward with Sheryl’s writing prompts and acknowledging that what happened to me last year almost destroyed me.
I never thought about how much my life would change with just two words from a doctor and I never thought that ten years later, I’d be in the situation I’m in right now – which is surviving.
If not for my decision to take a break and then go back into the system to find a new rheumatologist in October, I’m not sure where I’d be right now. I’d likely be worse than I was last year.
Failing with Chronic Illness
After the madness of Christmas, New Year’s and Lunar New Year, my life basically ground to a halt. The extra holiday activity plus the depression I experience over the holiday season resulted in two massive flares in January and February 2019.
When I do too much, I always end up creating extra work for myself. I struggle with the perfectionist in me because that tendency to pay attention to all the extra details is always my downfall. I’m trying to learn to live imperfectly. So far, I haven’t done a great job with this, but I’m working on it.
I’m also really bad at saying no to people, and I admit that I sometimes allow people to take advantage of this with me. I’ve decided this isn’t going to happen anymore and actively set a resolution in September 2018 to just SAY NO.
Failing to say no to certain activities or events or even to people who want something from me almost always results in flare activity from extra stress and too much extra physical activity.
As soon as I allowed myself to start saying no, I felt more empowered. It felt good not having to worry about figuring out how to get around at another event or helping people out when it’s risking my own personal health.
Additionally, I see now that I failed in 2018 to stay positive and keep my eyes on the light at the end of the tunnel. It’s very easy to get lost with yourself when you’re in never-ending pain. I know I lost myself a bit last year and turned down everything from freelance opportunities, outings with friends; and worst of all, I didn’t give much thought to how my husband was coping with me being so sick.
Now that I’m feeling a little better, I’m working on these things and paying more attention to myself and especially to my husband, who is my best friend and also my primary caretaker.
How do I make him feel like more of a husband and less of a caretaker? I’m not sure. I’m really struggling to find a way to highlight the positives in our relationship instead of him always having to worry about the negatives of me being sick.
Succeeding with Chronic Illness
The two things I’m most proud of at succeeding at last year are my diet reset and FINALLY realizing that I must say start saying NO more often.
In regards to my diet reset, I started playing around with my diet by doing elimination diets in 2011. I can’t tell you how many books I’ve read on autoimmune diets and gut health (although this link will give you an idea if you’re interested) or how many cleanses and elimination diets I’ve tried in the past eight years.
I cut refined sugars, dairy, bread, soft cheeses, soda, and processed foods out of my diet completely in 2015, but it became clear in 2017 that I needed to take it further.
In 2017, I realized my gut health was a huge issue and resetting my gut flora became an obstacle that I needed to conquer.
In December 2017, an opportunity came my way via a local organic farmer by the name of Pierre Loisel Sr. He convinced me to move to an organic vegetable diet and I started eating his microbe-rich veggies that month.
To this day, I start every day with a smoothie and giant bowl of greens that is loaded with nuts and dressed in homemade salad dressing made from refined, cold-pressed olive oil. Pierre was convinced I’d see improvement in three months. Having had success with patients with lupus, Crohns’, and strokes, he felt sure that his veggies would reset my GI tract with good bacteria. By loading my gut with good bacteria, I was upsetting the bad bacteria that were thriving in my gut because of all the meds I was on. It turns out he was right!
At first, I lost weight rapidly. There is a huge difference in how I look now versus how I looked at this time last year. Within three months of staying on this diet, I started noticing less bloating, less stomach pain, less problems with constipation, and overall, a better sense of well being with my gut.
Within eight months, I dropped my GI doctor completely along with all the meds he had me on to protect my stomach and to help with my GI issues.
My persistence with this organic veggie diet has paid off. I’ve finally found a diet that works well for me. Overall, this has meant less medications and I cannot believe the change in my stomach. As long as I start my day off on his veggies, I can even have a cheat day or two every once in a blue moon.
Lastly, in 2018, after close to five years of pestering my doctors for access to biologics, I succeeded in finding a new rheumatologist and I convinced him that the standard course of NSAIDS and DMARDS I’d been on for the past decade were no longer working and were keeping me housebound.
I was right. Once he switched me over to a biologic called Enbrel, I started feeling a little better. I’m five months in with Enbrel now and it has been life-changing so far. It has allowed me to get out a little more and I’m not in so much pain all the time. The pain is still there, but it’s bearable and my day to day life is more manageable than it has been in the past four years.
Any chronic illness patient knows how hard it is to move to a new doctor. There is fear of being judged, of not being believed, of being ridiculed, of having someone tell you, once again, that you’re depressed and anxious and this is all in your head. It’s stressful and a total nightmare to go through this.
I’m proud of myself for finally getting fed up with the doctors who were telling me I needed to try more antidepressants and for going through five new doctors before finding one who actually listened to me when I pushed him to move me to the next logical step in treatment for Ankylosing Spondylitis.
Had I not done that, I wouldn’t be where I am today, which is slightly further down the path of having a little more quality of life.
Pausing with Chronic Illness
Chronic illness is exhausting. You never get a break from it. It never goes away and it’s something you have to face every single day of your life. From early 2015 to October 2018, I was hitting all my appointments hard and I knew I was burned out from being at the hospital so much.
It was affecting me on a profound level. The depression and trauma that I was experiencing just from having to drag myself into hospital appointments and sit through at least two appointments with different doctors every two weeks took a huge toll on me. I knew that I was in severe doctor burnout, but I didn’t know how to deal with it or cope with it.
In June 2018, I decided to take a huge risk and fly home to Canada to spend time with my family. I haven’t been home in two years and the risk of going home without access to health care was scary for me.
I planned every detail I could think of, from taking advantage of the shortest flight times and delays to full disability travel assistance and insisting that I not go to my parents’ home, where I’d have to manage three flights of stairs every day.
Instead, we decided to spend the month at our family cottage in North Bay, Ontario, which is flat with no stairs. It’s a tiny cottage right on the lake and we were counting on good, clean fresh air, and no stress.
It turned out to be one the best decisions I made in 2018. I put my life on pause for a month last summer and it was exactly what I needed to recharge, rest, and save up some new energy to dive back into the system upon my return to Taiwan to resume the hunt for a new rheumatologist.
Today, I know I need to put at least two days on pause each week. These are full rest days. I don’t work or accept invites or go out. On rest days, I focus on reading, practicing ikebana, or writing for myself. I’m finding that taking this time each week has helped my overall mental well-being, as well as my physical well-being.
It’s good to pause and take a breath and focus on something that is NOT related to all-consuming health issues. In my case, the combination of being with family, fresh air, good food, and being on the lake turned out to be a great way to decompress from being sick every day. I was still sick, but I didn’t have to focus on all the other things I have to focus on when I’m at home and dealing with regular hospital visits.
Deciding with Chronic Illness
This year, I decided to drop the things in my life that were causing me stress. It was a simple decision to make and it has ultimately led to my next writing prompt, which is thriving.
Thriving with Chronic Illness
I’m not sure if I can say I’m thriving yet, but I’m better than I was last year. I still have bad days and bad weeks like every other chronic illness patient has, but I’ve found hope with the new medication I’m on and it has given me back some quality of life.
Now that I have a little more energy, I’m being really careful and I’ve slowly starting opening up my work schedule a bit more. I’ve taken on a few more freelance projects again and I’m feeling good about being able to finish them without jeopardizing my health.
I’ve set my limitations and boundaries so that I can focus on the things that keep me happy and well adjusted to daily life with chronic illness. I’ve established good, healthy routines with my diet, sleep, and day to day schedule, and I can’t stress enough how much it helped to simply make a switch to focusing on activities at home that keep me happy and at peace, even in pain.
Thriving, surviving, succeeding, and failing with chronic illness – it’s all part of my journey and I’m learning from it every day.